Tuesday, March 31, 2009

Tonight we went to our Little Gym Class. Elena has reached a plateau of sorts with this place--she has been in the "Beasts" or "SuperBeasts" category class for several years. Most kids are in it a year. Our problem is that the next class up is without parental intervention, so unless she is independently mobile, she can't move up. The social interaction in our current class isn't terribly enriching for Elena (most of the children are half her age, and don't interact much with each other) but the gross motor challenges are still good for her.

I pieced together a video from tonight. The first segment (flip on the bar) is the very first thing she did. She took more independent steps in this class than we've ever seen her take since the operation. Her leg extension is pretty good, but her heel IS up a little in her right shoe. The last walking segment you can see her do a sort of "hip rotation" when she steps with her right foot. I'm not sure why she does this, but it's pretty consistent. She did it before the surgery too--it was probably worse, but now the rest of her body looks better so it might seem more exaggerated to me. I hope that if/when her right heel can get flat (tendon stretching/lengthening) maybe that will look better. Her hands are up near her shoulders, which she did before the surgery also, but again--not as stiff, and she's able to move them independently even when walking. She also falls better (not shown)--she can bend her knees and fall to one side or fall forward on her knees rather than falling "like a tree".

Elena had to take a break from therapeutic horseback riding for 6 weeks after surgery. This was her first day back. Our lesson was as if we never left--still 30 minutes, and our handler had E do her normal range of motions--sitting forward, backward, sideways. The only real difference is that Elena needed more help with her transitions, and that she was a little more wobbly than usual. She rode Patchy, who is a large pony. Sometimes, she rides Cookie, a smaller pony (takes more core strength when she rides him).

Wednesday, March 25, 2009

I don't have great pictures from therapy today, but suffice it to say that E's been working hard. We've been trying to keep her upright (less crawling and being carried) this week. Today, she had PT in the afternoon--intro to tap dancing (putting "taps" on her heels), kicking (trying to kick only from the knee down), therapeutic trike, dorsiflexion, etc. After all that (and being a little sick, to boot) she still wanted to do the treadmill and leglifts this evening. Here's how we do it:

Treadmill (she gets to watch movies during Treadmill Time)

Close-up: note how she drags her right leg sometimes. This gets worse as she tires. The left foot gait pattern occasionally goes heel-toe instead of flat-foot. Also, while her right foot is toe-heel, she gets better extension of the leg than she did pre-SDR.

The lift on her left shoe helps equalize her right and left legs; her right leg is longer, and has the opportunity to extend fully b/c the left side is lengthened to "match". We see much less knee/hip rotation "caving in" (right side) since we've had the lift.Overall, she looks great here. Unfortunately, without a firm grip or contact guard, Elena will immediately start losing her balance. We've been treadmilling for months now, and this hasn't improved much. Still...we will be patient!

Since starting our leg lift regimen (around Thanksgiving of last year), we've noticed a dramatic increase in her strength and stamina for walking, squatting, standing, etc. Her extension is much better now than pre-SDR. Note she does try to extend both sides at the same time (I hold one foot down), and she rounds her back/holds on to compensate for core weakness.

Plus stretching as usual--we're introducing some different stretches, and trying to get her to be more independent with the stretching regimen. More on that later.

Elena has been growing like mad. At least, I think so--she's eating TONS and seems to lengthen every day. I have heard horrible stories regarding growth spurts and spasticity--kids end up SO TIGHT and desperately need lengthening/aggressive stretching therapies during and post-spurt. Any time I feel a little sad about how Elena's heels are *slightly* up, I think about how she would be had we NOT done SDR. She would be on her tip-tippy toes, falling all over the place, unable to stay down in her braces. I am sure of this.

Because of this surgery, at this time (during growth spurt) we're able to get E in her braces. That is priceless. I checked her tonight--she's grown an inch since December 28th, 2008.

Friday, March 20, 2009

Yesterday we went back to see Dr. Elias at UVA Neurosurgery for our first follow-up.

I might be exaggerating, but there were definitely a lot of "WOW"s, between him and his nurse.

YAY!!

Elena showed them how she can do the following (could she do this before surgery):

While lying down, she can cross her (straight) legs across the ankles. She can cross with either leg on demand. (NO)

While lying down, she can bring her knee towards her chest (not all the way up). She does it better with the left, but the right looks pretty good too. (YES)

While lying down, she can do "snow angel" motions with her legs (abduction/adduction). Sometimes her legs are bent, and sometimes she moves them "one at a time" instead of both "in and out" at the same time. (NO)

She can lie on her back with her legs straight, with the backs of her legs against the surface. Her hips seem even. (YES)

She can turn over from her back to her stomach completely. While flat on her stomach, her quads stay in contact with the floor surface, and her legs don't cross (or touch except maybe at the tips of her toes). (YES)

She can walk with her walker while "squishing her feet" flat on the floor. She walks toe-heel with both feet. She gets her left foot flat, her right foot mostly flat (heel is up just a bit). (NO)

While holding on for balance, she can squat down with feet mostly flat. Her knees touch. When asked to open her knees to the side, she can not or does not do it (she has done this ONCE in a therapy session last week). (NO)

Elena is doing GREAT. Cruising, pushing her walker, using her loftstrands (very little, but some), jumping (while holding on to something), and some (a few) independent steps. Overall she is doing very very well, with her main issues being her right heel creeping up (for whatever reason, probably tendon shortness?) and overall weakness.

Soccer is a big motivator for E. I play soccer, and she ALWAYS wants to play too. We walk and hold both hands while she kicks (or, more likely, runs into) the ball. She wants to "do it herself". So, I told her she could-but as soon as I told her that meant standing up alone and moving, she didn't want to anymore. So I set it up so she could kick the ball a few paces (2 or 3) while walking to the back of the couch. It was a RAVING success--she did this, steadying herself to walk and kick, sometimes even stopping to steady herself or kick with her stronger leg--10 or more times, with a "speedway break", which is the small walkspace between the couch and the wall (she can steady herself with both hands to the sides). Jason and I both believe the Speedway (we also call it The Track) has really helped Elena's speed and confidence. She can move around the couch area pretty quickly--almost as fast as pre-SDR.

The used the soccer reference at KCRC, trying to get E to kick from only the knee down (normally she just runs into balls with her legs, trying to make contact with her feet). The motion of kicking (knee-down) was successful, albeit very very small.

Kick Left (note how hard she grips the walker in these pics)

Kick Right

She also tried flexing her feet (ankle only is the goal) out of a tray of rice/lentils. This time--I still can't believe it--SHE DID IT. BOTH FEET. The PT would put a penny on the tops of her toes, and cover them with rice and ask her to move her feet to find the penny. She flexed her feet between a centimeter and an inch, more on the left side (typical)--but even on the right, the degree of isolated movement was unmistakable. I was SHOCKED. These pics are from where she did it with her legs "straighter" rather than bent. Pictures probably don't do it justice, but here's what I have.

Dorsiflex left

Dorsiflex right

Shooting baskets, bare feet (keeping that right foot down!)

She also got to use the therapeutic trike. She loves this tricycle! This time was a huge improvement from last week--not only did she propel it herself for part of the time, she also steered it (at the same time). Like the previous post about swinging--before the surgery, it was nearly impossible for Elena to do different, concentrated movements with the upper and lower parts of her body. Now she surprises us all the time!

OH. One more important thing. The PT checked after I asked about leg length differences--and she said she can see that her right leg IS PHYSICALLY longer than her left. Not by much, but enough for her to notice. We've had a lift on her left shoe since the end of 2008 to accommodate what we thought was a FUNCTIONAL length difference. Either way, she'll need this lift in all her footwear, I guess.

Thursday, March 12, 2009

Elena has been getting stronger and her endurance is improving, but there are still some lingering concerns--not really surprises, though. Her posture is more even, and her tone now allows her to move better... but she continually leans on her left side/left foot/left hip. Sometimes this is more extreme. She continually needs to be reminded to stand on two feet (instead of having all her weight on the left one), have these feet even (she postures her right one back), and to try to keep her feet flat. Her right foot stays better in her AFO/shoe, but needs to be fixed (heel back down) several times a day.

Example of her preferred posture (right foot back):

Left leaning while using posterior walker:

Extreme lean on the hippity-hop:

Here's the good pics!

She can do the hippity-hop for a few bounces herself. She tries hard to right herself, and does a pretty good job. She can bounce, pushing off her heels--but she hasn't figure out that's how you do it (right now she's just lucky)

Riding the therapeutic trike--she even propelled it herself for 3-8 feet! That's a first, she hasn't engaged on our trike at home (but that was last year). Her right leg caves in, but not nearly as much as it used to (but that could be b/c of the different type of trike).

Abduction/Adduction--she could not do this before the surgery.

Trying to flex her feet out of rice/lentils (she did it, a little)

Bridges--she had a hard time with these last week. Little sister Vivian is mesmerized.

Sit-ups (assisted, for now)

Standing tall, after building her tower (with help to bear weight centrally)

Monday, March 9, 2009

Last weekend, E got to do a very small amount of sledding b/c we got a couple inches of snow. This weekend, it was 80 degrees and beautifully sunny. Perfect weather for swinging!

We've been trying to teach Elena to swing herself--pumping her legs back and forth to keep going. Before the surgery, Elena "stiffened up" anytime she was engaging her upper body--which meant pumping her legs while holding on to a moving swing didn't happen.

We spent Saturday at the Children's Museum of Richmond. We love this place, but it was a gamble b/c it was our first day where we expected Elena to be playing hard without a nap (unless she took on in the car--which she didn't, of course).

We were at the museum for over 2 hours, well past Elena's naptime, and in a word, she was...AWESOME. Using her walker, climbing (assisted), going up/down stairs (assisted), standing, sitting while playing, etc. Here are some favorite pictures:

Playing Doctor in the CMOR ambulance

Going to the CMOR bank

Dinosaur Area

A little too early for bumpy slides...not too happy after that one (back still tender)

We're getting back to our same-old-routine (plus a few more exercises). Back to the treadmill...leg lifts...

Elena had her PT session last week, mostly barefoot. She still likes to point/keep on her toes on the right side, but we learned a new voice cue: "squish your feet". When we tell her that, she puts her heels down and tries to squish the floor.

Next was trying to have her bear weight on either side by playing in half-kneel. When she bears weight on her left, her right knee caves in badly and she starts falling on her rear b/c she doesn't know/understand to steady herself by keeping her right knee up. She does it beautifully on the opposite side (not shown).

She did some assisted walking without her braces on (this is rare at PT). I immediately noticed she would nicely extend her leg (through the hamstring) on her left side (strong side). Her gait pattern on the left looks more "flat footed" than "toe-heel", but this has always been the case--only now it's a more fluid motion. The right is still "toe-heel", but it too is more of a relaxed motion than a laborious, dragging effort.

Wednesday, March 4, 2009

Elena's walking pattern was analyzed before her surgery--twice, actually, once in January 2008 and again in January 2009. The technology they use to do this is pretty cool. They deck out E in a bunch of sensors after taking tons of measurements of her body and her flexibility. We sang "I'm a little robot" (instead of '-teacup').

Elena walking down the track--this video quality is poor, but you get the idea.

They do this several times under different circumstances (with/without braces, walker, loftstrands (wrist crutches), etc) and then based on the sensors and her measurements, construct a digital representation of her bones moving. Pretty cool.

Bones--walker, no braces

Bones--walker with AFOs and shoes

Bones--loftstrands, with AFOs and shoes

We'll do another gait lab analysis now that the surgery has been done, between 6- and 12-months post-op.

Sunday, March 1, 2009

After some tweaks to her AFOs, we've been getting Elena up and moving again. That's been easy, b/c she wants to be independent. We let her cruise by herself (with someone close by) and have just let her start pushing things (walker, stroller, cart, etc.). We don't let her do much without supervision b/c she hasn't fallen since her surgery, and we're worried she could hurt the incision. That should change in a week or two...or whenever she falls and we don't catch her.

Activities from this weekend: Saturday Shopping at Harris Teeter

We let her push the kiddie cart. She was standing or pushing for at least 20 minutes. We'd hold the "flag" on the cart to keep her moving slowly--and keep her from leaning into her stride too much. She wanted to look at greeting cards, so she did, and aside from taking pictures, I kept her right leg straight and her hips neutral as she perused the card selection.

Sunday Visiting Mommy's Work (UVA Hospital)

Back at the Life Less Ordinary picture hallway! I might change my blog picture soon. She pushed her walker for about 15 minutes after "playing scientist" with her knee immobilizers for 15 minutes. After a visit to the coffee ladies, she used her walker some more, but not as long. The biggest difference now is that she is willing to shift her weight to her right side more often (but still defers to the left), and we haven't seen her drag her right foot ONCE since the surgery (she used to do that ALL THE TIME).

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.